Board of trustees DSi is governed by a board of trustees. Trustees give their time voluntarily and oversee the strategic direction and legal obligations of the charity. All of our current trustees are family members of someone with Down syndrome. The board is diverse, including people from all over the world, with a wide, combined breadth of professional and lived experience. President - Bridget Snedden Bridget Snedden is the parent of a young man with Down syndrome and President of DSi. Her work over the past 25 years has focused on what is needed to ensure a fully inclusive life for people with disabilities. She has held a range of governance and management roles and is currently a director of Family Network NZ. Vice-President - Rhonda Faragher Dr Rhonda Faragher is Director of the Down Syndrome Research Program and Associate Professor in the School of Education, The University of Queensland, Australia. Treasurer - Patrick Clarke Patrick Clarke is retired as Chief Executive Officer of Down Syndrome Ireland. He is currently Treasurer of DSi, President of European Down Syndrome Association and Vice President of European Disability Forum, representing people with Down syndrome and intellectual disabilities. Ana Lucia Arellano Ana Lucía Arellano Barba, from Ecuador, has been a human rights activist and advocate for the rights of persons with disabilities for 23 years, inspired by her son José Miguel, a self-advocate with Down syndrome. Currently, Ana Lucia is Chair of the International Disability Alliance and President of the Latin American Network of Non-Governmental Organizations of Persons with Disabilities and their Families (RIADIS). Carol Boys Carol Boys is Chief Executive of Down’s Syndrome Association (England, Wales and Northern Ireland) and the mother of Alex, a young man with Down syndrome. Carol has been the driving force behind the successful growth of the DSA, with a strong team of dedicated staff. Janet Charchuk Janet Charchuk is the DSi Ambassador for Canada and the first person with Down syndrome on the board. "I am a motivational speaker, self advocate, active community member and volunteer. I live independently and work part-time at a pre-k program and at a ranch. I am one of the founding members and past chair of VATTA, Voices at the Table for Advocacy, with the Canadian Down Syndrome Society. I am the past chair of PEI People First. I have spoken on issues such as inclusion, equal rights, housing, and employment to educators, parents, lawyers, medical professionals, self-advocates, and politicians across Canada, the USA and as far as Trinidad and Tobago. With Special Olympics I have had much success competitively, winning Gold for Canada in the World Games in 2017 in the sport of snowshoeing. I am also an athlete leader, spokesperson, mentor, and health messenger. I enjoy sports, being involved in my community, being with my friends, cooking, yoga, and showing my abilities while speaking up for those who cannot speak up for themselves." Vanessa dos Santos Vanessa Dos Santos is the mother of 3 boys of which the youngest has both Down syndrome and Cerebral Palsy. Vanessa is Co-Vice Chair of the International Disability Alliance. She has been working in the disability field since 1996, focusing on intellectual disability in poverty-stricken areas in Africa. Penny Robertson Penny Robertson OAM is one of the founders of DSi and also the founder of the Australian International Schools in Indonesia where inclusive education has been successfully implemented since 1996. Jessamy Tang Jessamy Tang was a sports media executive before becoming a passionate advocate when her son was born with Down syndrome. She chairs the WDSD Conference at UN HQ in New York. She also currently serves on the board of Disability Rights Legal Center and The Matthew Foundation. Darren Warkcup Darren Warkcup is treasurer and a trustee of the Down’s Syndrome Association (England, Wales and Northern Ireland). Full bio to follow shortly. Manage Cookie Preferences